Katie Elder

Community Voices

Adding ME to my list🥴

Went to my Dr yesterday. Supposed to be routine visit, blood work etc.
She tells me she is fairly certain I have ME on top of lupus, fibro, cfs, degenerative arthritis, asthma, sojourns, raynods, liver damage from lupus, and psoriasis. Can anyone tell me more about ME? I looked it up and read about it, probably 95% of the symptoms and description fit to a tee. But I'd really like some input from people who know first hand as well as how to add it to the mix and learn to live with it. What am I really facing?
Thanks my Mighty friends.
Blessings 💜

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Community Voices

Hi group, it's nice to meet you! I wish i was coming with happy news. I'm sure we all feel that way. I'm glad this group is here. I hope I'm not overstepping with this long note.
I am so frustrated I'm in tears today...
I desperately want to get out and do some things I love and need to do, like getting my meds. But my blood pressure isn't good.
I have Medically Resistant depression and bi-polar 2. I also have "refusal to diagnose by Drs" Chronic Fatigue.
My blood pressure drops alarmingly and I have to sit or lay down. I did a blood pressure cuff test for 24 hours. When the tech put it on it was 86/54. He was alarmed...and I had been sitting in a wheelchair! When the results came back my Dr said:
"Heidi, you blood pressure is normal". Dr. M
I BLEW UP. He and his staff refuse to talk with me. I am trying to SEE the test and numbers, as is my right. Instead of communicating, he is sending me to cardiology...myself and cardiology don't know WHY.
Yes, I'm firing him, but first he needs to send a referral to Mayo.
I'm frustrated right this minute because I want to get out of my apartment and do something enjoyable...
But I need help. I need someone to go with me because my blood pressure is low. And I have no one.
I recently moved back to Minnesota after 35 years in Colorado. Another bad decision I get to beat myself up for.
I was starting to meet some people and put of the blue, WHAM, I ran full Tilt into a wall and was run over by 3 semis...lol, good description for how my Chronic Fatigue started.
I'm frustrated and angry. I'm tired of being sick, tired of no help, tired of all the paperwork I don't understand, tired of the medical system, tired of trying so hard, tired of how my family treats me and so tired of the inability to get out and do things.
I'm tired and so painfully sad about being alone. Where did my life go?
Thanks so much for listening. I'm always worried I write to much. My mother constantly tells me I talk too much.
Anybody in Cirafo need a roomate???
#ChronicFatigue #BipolarDepression #frustrated #alone

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Community Voices

Frustrated with Doctors and lack of Answers

Hi everyone. This is my first post here, but it feels relevant to my life. I have been struggling with chronic fatigue symptoms for almost a decade now, since I was 13. Recently I have visited multiple doctors to try to recieve some diagnosis. I have done panels of blood work, ultrasounds on my liver, gallbladder etc., and seen a sleep specialist. I brought up the idea of CFS to my gp but she was kind of dismissive. She told me it was a diagnosis of exclusion, yet everything else has practically been excluded.

When I visited the sleep doctor, the only thing to test I have left is narcolepsy, which I really don't think I have. The issue is that I have stop my antidepressants that stabalize me and give me energy for at least two weeks before this test.

So I can't be tested to exclude absolutely everything. The other thing is that I was told my chronic fatigue may stem from my bipolar disorder, and there is nothing else more I can do at the moment to fix that.

So this is who I am, still.

My name is Liv. I am 21 and live in Northern Idaho. I am a senior majoring in psychology and minoring in justice studies while also working part time as a caretaker.

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Community Voices

At the ER

Hi everyone. I’m at the ER right now, and wanted to reach out to you guys. I’ve been having a huge problem for a long time with severe stomach problems, and I have a problem with overeating too, so the combination has made me feel really sick, and the past two months or so have been the worst. Ive also lost over 50 pounds in the past year or so and no one knows why yet, but as Ive been sitting here Im serously wondering if I could have a blockage or impaction. I read about this just now on the internet and it fits my symptoms to a tee. Plus that can cause weight loss. I havent seen the doctor yet, but Im almost excited because it makes sense to me and though I dont want that, I would be glad to finally know whats wrong.

Please keep me in your prayers okay? Im beyond ready to get WELL!

#ADD #Bipolar2 #Depression #Undiagnosed #GI issues

10 people are talking about this
Marcia Frost

Traveling and Being a Writer With Connective Tissue Disease

My job consists of a lot of social media and my friends and family are always envious of my travels, especially when it includes photographs of delicious food and behind-the-scenes locations. What most of them don’t know is that I was sitting at that dinner table making sure I discreetly took my medication and counting the moments until I could be in a comfortable bed. It’s also not spelled out that I had breakfast in bed because I couldn’t get out of bed, whether it was from overwhelming fatigue, pain, an illness that my poor immune system picked up, or a connective tissue I had recently injured. Marcia at the Amphitheater in Pula, Croatia, in June 2015. The hardest part is knowing that I am at a strong point in my career. I have built my reputation as a writer and influencer in the travel, food, and wine world, after years as a well-respected tennis writer. I have a consistent gig on television talking about my travels. I love what I do, but I finally had to face the fact that I just can’t do it the same way anymore. I have managed to battle through fibromyalgia for many years. The majority of people who know me haven’t even known I had it. While I politely declined dinner invitations during tennis tournaments and said I had too much work, it was usually because I needed a painkiller, a hot bath, and an early bedtime. When I “disappeared” from events, I was sometimes just sitting in my car hoping the pain would go away. It’s not easy pretending to feel good when you don’t, but my career was important to me, both as a way to pay the bills and because I really enjoyed it. I couldn’t take a chance of losing work because I was perceived as not healthy enough to do it. In December 2012, after my fifth lumpectomy, I underwent a double mastectomy and reconstruction. With a family full of breast cancer and three early stage masses of my own, my doctors and I felt it was the way to go. What followed over the next two years was a total of 10 surgeries, massive staph infections, a collapsed lung, blood transfusions, and multiple bouts with pneumonia. I also spent many months attached to a wound vac. I was just told I had a “weak immune system and lungs,” but it was never investigated further. I could barely move during that time and tried to take painkillers only when I had to. I still worked every moment I could between surgery. I was finally feeling pretty good and just back to dealing with the fibromyalgia in the beginning of 2015. It was actually the longest period (about six months) I had worked full time straight for three years. I decided to go back to something I had previously done for most of my adult life, covering the U.S. Open Tennis Championships. I knew it was tough on my fibromyalgia, but I began to have some other strange symptoms: I was getting nauseous and rashes in the sun; I had constant eye pain; I was getting migraines, something not normal for me; and I was feeling so weak at times I really felt I couldn’t move. These symptoms continued to worsen over the next few months. With the eye pain, I especially found work difficulty too complete. My concentration was off. I was sleeping 12 hours a day and still felt I needed two naps. The real clue came when I got very sick from even one glass of wine or a cocktail. Given the fact that I had been a wine and spirits writer for years, this was certainly new. The eye pain became horrible and I went to the eye doctor in January 2016. He told me the inflammation behind my eyeballs was so bad it had scratched them! He put me on steroid drops and moisturizing drops. He also told me that was something he had only seen in autoimmune diseases. That set off a red flag since my mom has lupus and her mother had rheumatoid arthritis. I called my internist. She agreed that my symptoms pointed toward a connective tissue disease and, when my blood work initially showed a positive ANA (anti-nuclear antibodies) with lupus titers, I was sent to a rheumatologist. Over the past 10 months, I have gathered a team of doctors I see regularly to deal with: muscle and joint pain; immune system issues such as frequent infections; rashes, photosensitivity, eye pain; dryness and swelling; neuropathy, headaches; concentration problems; and, the most serious, lung issues that include COPD, emphysema, and asthma. Since my bloodwork continues to indicate connective tissue disease, but not specifically point enough to one, my doctors’ visits offer diagnosis of lupus, scleroderma, Sjogren’s syndrome, and mixed connective tissue disease. The rheumatologist, who has the ultimate decision, has me categorized as “undifferentiated connective tissue disease,” which basically means that I definitely have one of the above. He says it may never be clear which one. A lot of my friends can’t believe I’m satisfied with this diagnosis. Truthfully, it doesn’t matter. None of those diseases have cures. All of those diseases are progressive. As long as I have doctors who are treating my problems, keeping me alive, and slowing the disease progression, a label does not matter to me. It’s taken me months to come to terms with the fact that my life is never going to be the same. I recently tore a tendon and ruptured a ligament in my ankle. It required major surgery, an additional surgery, infections, and a lot of rehab. In a strange way, I was relieved. It was so much easier to tell people that I couldn’t go places, stay up late, am exhausted, and have pain from the ankle, than admitting I’ll mostly be feeling this way all the time from now on. Seabourn invited Marcia to write about their luxury cruise in 2013 and she took her mom along for the trip. I’ve had to give up a lot of work and a lot of trips. My travel now is never alone and never with long schedules. There must be rest time. The same goes for my work at home. I’m lucky if I can get in a total of a couple of hours a day with long breaks. I can no longer teach, something I enjoyed doing. I’ve done this story over months, a few minutes at a time. I can’t sit at the computer for long so I only take occasional freelance work now if they have long deadlines since I never know how I’ll be feeling. My blog is now four months behind since it’s now eight hours of work over three days, not one, with frequent breaks. Some days I can’t even get anything done. What I can do is not give up. I guess that comes from being raised by two disabled parents. I do yoga and Pilates for a little bit every day I can, I walk when I can, I am trying various supplements and diets, and I make sure I rest when I start to feel the slightest bit sick so it doesn’t get serious. This illness may have taken my career, but it hasn’t taken my fight for life. I’m not writing all this for sympathy or shock value, it’s for sensitivity. The next time you see beautiful photos of attractions, scenery, and food from me — or someone else — don’t presume. Many chronic illnesses are “invisible.” There’s a lot between those photos that you don’t see. We want to hear your story. Become a Mighty contributor here .

Sarah S
Sarah S @sarah-s-n

Moving From Undiagnosed to Rare Disease With Episodic Ataxia

There is light at the end of the tunnel. At least, there was light at the end of mine. Bright, soft lights and a reassuring doctor. For I had not just been in a metaphorical tunnel in my search for diagnosis, but had just come out of a real tunnel: a barely-lit basement corridor, where in tiny adjoining rooms patients like myself had their heads jerked around, lights shone in their eyes and large amounts of water injected into their ears: all in the name of finding out what neurological or ear problem was troubling them. After nearly five years of unexplained symptoms, I hadn’t expected much from this particular appointment. Yet here it was: the long-awaited objective test result that pointed to cerebellar disease, which was causing my balance problems. Maybe I should have jumped for joy or broken down in tears. But as the head of the clinic, a kindly and cultivated man who my neurologist had persuaded to see me urgently two days before Christmas, took the time to explain what was happening to my body, my mind was beating to its own rhythm. A mounting drum beat: of course, of course, of course. At last. I had known within me for someone that I was not struggling with a conversion or psychosomatic disorder. This “knowledge” was not the fruit of prejudice or merely fear of such conditions, but on the careful observation of when and how my symptoms occurred. It had been painful that so many people seemed reluctant to believe what my body was telling me. Now the rest of the world would listen to my diagnosis. Below the drum beat, the undertone was a growing sense of unease. The doctor was being so solicitous, taking so much time with me—chatting to me about my research and his African masks and statues—when doubtless he had many other things to be getting on with. This had happened to me before when my brother was very ill as a child, when a nurse dropped everything to talk to me whilst my parents dealt with very bad news, and the echo of the past rang alarm bells. As he told me I would likely be referred to a specialist neurological center and that as I was presenting with something unusual (all of which I knew already from my own neurologist), I began to wonder if he knew more than my other doctors did about how severe my case could be. The consultation over, I stumbled out of the clinic feeling that something major had happened. But what exactly? The brilliance of the doctor’s office had faded for urban winter gloom. The only way I found to mark this long-awaited yet thoroughly unexpected occasion was to grab a taxi home to be alone with my thoughts. Enough of tunnels: my wonky walk and I could be jostled in the metro some other day.The taxi ride was unenlightening: only after a few weeks have I begun to have an inkling of what my new reality looks like. On the positive side, doctor’s visits have become so much easier for me. I have stopped preparing how I would present each symptom in order to avoid feeling brushed off. Conversations are less stilted. I stopped thinking of the standard neuro exam as a pass/fail test. I have had some wonderful doctors, but on my side I often felt awkward about the possibility of a psychosomatic diagnosis hanging on the air. Appointments with specialists have been lined up. I’m trying a medication which works for many people with similar problems. Suddenly things are moving that could not have been put in place without diagnostic evidence. On the other hand, there are downsides from getting a diagnosis. One is a sort of grief. When you have “it- could-be-this-it-could-be-that” syndrome, you might be scared, but you don’t have to fully come to terms with all the implications of any particular diagnosis. In particular, limbo allowed me to keep thoughts of having a genetic condition I could pass to my kids at bay. Furthermore, when you have an episodic condition like mine, there is always the hope—albeit irrational—that “it” won’t come back. Now I know it always will, and thoughts of what it will be like to have a balance disorder when I’m old and have fragile bones pop into my head from time to time. I can only hope that for me and for my babies (if they are affected) there will be an effective treatment by that stage. There is another too which is also a sort of grief. Part of me, unconsciously, hoped that a diagnosis would repair some of the wound of the last five years of living without diagnosis and with a very funny walk. Months of trying to walk behind my boss rather than in front in case he thought I was drunk. Losing my job because of sick leave. The anxiety of being pregnant and having an unstable gait. Coming to terms to walking with a stick when needed. I guess I’ll have to come to terms with the fact that’s just how it was and very few people were completely with me all of the way. That there is no medal for the undiagnosed, even though perhaps there should be. I wonder if that’s why I’m here. Many of us have lived experiences we never asked for and that few people intuitively understand: except each other. I need encouragement and understanding and empathy for this next stage of my rare and chronic illness journey just as much as when my symptoms were unexplained. For if there’s light at the end of this next tunnel, maybe it will take the form of a wonder drug, or physiotherapy or rest, but almost certainly it will shine more brightly if it involves community. #raredisease #ataxia

Community Voices

Rare chronic disease awareness

Every week and month, sometimes daily, I read about a rare or chronic disease awareness day (week, or month). As someone who has been diagnosed with such a illness and helps to run a national patient group for those who have this disease, I wonder how we can now stand out in a crowd of a hundred autoimmune diseases and over 7,000 rare diseases according to NORD. Then consider the common diseases that overshadow us.

We all have a central message: "We have ________and need effective treatments and cures." With such a universal endpoint as our goal, how can all of us be heard above the din?

There are broader based groups such as The American Cancer Society, American Lung Association, American Heart Association and many, many more. These groups tend to focus on patient education and advocacy/policy efforts at a national level. And yet the "little guys", often patient founded and volunteer run groups and organizations need to be heard as they are often those "in the trenches", experiencing the daily burden of their disease.

Pediatric diseases and disorders make up about 90% of all rare diseases, without a treatment according to Global Genes) , and too many without any research efforts ongoing at all. This is dismal and doesn't represent our country's health care objectives. The same is true for adults.

While we willingly treat heart disease and its consequences without shaming the patient, liver disease has an enormous stigma about lifestyle choices which can cause liver disease (alcohol abuse, illicit drug use, unsafe sex practices), most of the liver hundred liver diseases known are not caused by lifestyle choices.

According to www.pinmart.com, these are some (edited for space) of the other awareness days in September:

September 21st: World Alzheimer's Day (Purple)
September 29th: World Heart Day
September 5-11: Suicide Prevention Week (Teal-Purple)
Childhood Cancer Awareness Month (Gold)
Gynecologic Cancer Awareness Month (Teal)
Leukemia Awareness Month (Orange)
Lymphoma Awareness Month (Lime Green)
Sickle Cell Awareness Month (Burgundy)
Ovarian Cancer Awareness Month (Teal)
Prostate Cancer Awareness Month (Light Blue)
National Alopecia Awareness Month (Blue)
Thyroid Cancer Awareness Month (Pink-Teal-Purple)

Then there are awareness colors. Our organization has a medium bright green for our Awareness Ribbon but over the years, others have chosen this color as well.

September is PBC Awareness Month. This is the disease awareness effort I most relate to. Thank you to The Mighty for allowing me to add my day to the ever-growing list to be aware of. #Pbc #pbcers

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Community Voices

Collagen XII Bethlem myopathy 2 Congenital Muscular Dystrophy

Bethlem-Like Myopathy/BM2 or Collagen XII disorder, CMD?

At first I thought "well, this sure does explain the muscle weakness, but I wonder why it's considered a congenital muscular dystrophy. Wouldn't I have had symptoms growing up or be worse off than I am now? I think I'm fine. I can beat this and just keep strengthening while I can and maintain as long as possible!!"

I saw the Neuromuscular specialist last week and he was so kind and took as much time as was needed to explain the diagnosis of how the "bent collagen protein strand" causes muscle to die because the protein cannot break down and rebuild properly.

In all seriousness, this new disease is like so many of my other rare diseases: minimal -no information regarding the disease and they are all on a spectrum.

I'm thankful mine is mild at the moment and hope it stays that way!

There is so much to learn about this diagnosis and my others that I know little about.

Thankful it's not an "unknown". I lived with the "unknown" for many years (7-10+) treating multiple diagnoses improperly.

The non-surgical dumping syndrome, was treated as a diabetic or regular reactive hypoglycemia and made me worse until proper diagnosis. The ME/CFIDS was unknown and we exercised until I couldn't move, talk, or stand up. As was this diagnosis that could have been made worse during that time not knowing we were doing more damage.

I know with a congenital muscular dystrophy/COL12A1/Bethlem myopathy 2, ME (Myalgic Encephalomyelitis), dysautonomia, TBI, ADHD, Dysautonomia non-surgical dumping syndrome/rapid gastric emptying (look it up-all you'll find is surgical dumping syndrome or GP), Bilateral Vestibular Loss, Migraine (+vestibular migraine), Pineal Cyst, and many more, I should feel really crummy, but I don't.

I learned how to smile and remain positive from my friend with BRCA 4 (she passed Dec 2020) & that YOU have control over your chronic illness/disease and how you react to it/everyone else in a positive manner.

I have learned from many years of these rare diseases that no one (other than those who have it) will ever understand you and to not expect others to understand what you are thinking, feeling or going through.

I feel very blessed that my symptoms are mild, manageable now (For all diagnoses!) and I can move forward despite any obstacles God throws my way!

I can only do the best I can with what I have to work with.

I have worked very hard to find a self-care routine that works for me-specific exercise, diet, meditation, ST/OT/PT/VT despite many diagnoses having opposite treatments (BVL-stimulate and stay active as possible; ME/migraine/CMD-monitor energy levels, avoid overstimulation, and PACE self!

My SLP (Speech therapist) and I have a saying:


So I encourage you to be mindful, grateful, compassionate to yourself, and find out how can you turn your diagnosis(es) positive each day!

#bethlemmyopathy2 #TBI

#MyalgicEncephalomyelitis #cmd #bvh #Dysautonomia

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Community Voices

I think my ADHD is awol...

I am usually a very active person who can't even sit through a movie. Once Covid19 took over the country; I battled the beast myself for over two months. I haven't been the same since, I don't know if it's my medication not working anymore. I have no motivation, energy, stamina, and I feel like my mind has called it quits on me. I have gained 20lbs also, that's the worst part about it for me.
#ADHD #ADHD #lost #stuck #yuck #wtf

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Community Voices

I think my ADHD is awol...

I am usually a very active person who can't even sit through a movie. Once Covid19 took over the country; I battled the beast myself for over two months. I haven't been the same since, I don't know if it's my medication not working anymore. I have no motivation, energy, stamina, and I feel like my mind has called it quits on me. I have gained 20lbs also, that's the worst part about it for me.
#ADHD #ADHD #lost #stuck #yuck #wtf

2 people are talking about this